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Post-Neocate News

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More than a month ago I posted about what was almost our last full day of Neocate.  That’s right – almost.   Nothing is ever easy and straightforward, right?  Here is the update…

Right after I wrote about my mixed feelings about giving up Neocate I got sick.  I had an awful head cold and being the selfless person that I am, I was kind enough to share this cold with E.  It was a weird cold, it came on pretty slowly but then hit me really hard.  Luckily the worst of it was over a weekend and my wonderful husband allowed me some sick time so that I was able to recover and he focused on keeping E as happy as possible.  It’s really hard for a rambunctious little boy to be sick and tired.  Jonathan is a saint and took great care of us!

One of the side effect of E’s cold is that he wanted his comfort food – Neocate.

Let me back up a bit.  I have to admit that I didn’t really have a plan for weaning him off of the Neocate.  I had no idea how it would go, but kind of assumed that he would be happy to drink almond milk or hemp milk and leave the formula behind. I hadn’t really decided how I was going to substitute the Neocate so I started to give E the choice of what he would drink in his cup.  He drinks 3 cups a day and they had always been Neocate.

So  here’s how it went:

Me:  ” Do you want Almond Milk or Hemp Milk in your cup?”

E: “mesin cup”

Me: “Almond Milk?”

E: “NO, mesin cup”

Me: “Hemp milk”

E: “NO, MESIN CUP”

Me: “you want your regular cup?”

E: “uh huh”

And there you have it.  I have no idea what he was actually trying to say.  E is still perfecting the whole talking thing and we are currently at a stage where context clues are critical.  It sounded kind of like “medicine cup,” which makes sense because Neocate is kind of like a medicine.  But we’ve never called it a medicine.  In fact, Jonathan and I actually had conversations about what to call his Neocate.  We didn’t want to call it “milk,” because it wasn’t milk and we didn’t want him to think it was ok to drink milk.  We also didn’t want to call it “formula” or “Neocate” because it sounded too clinical.  So we settled on just calling it his “cup.”   Regardless of what we called it, he made it perfectly clear to me that he wanted his Neocate cup.  We had this conversation three times a day for about a week.  If I tried to slip him almond milk or hemp milk, he made a face, handed it back to me, and reminded me that he wanted his “mesin cup.”

I decided not to fight it for several reasons.  One, he was sick.  I know that when I am sick I like to indulge in comfort foods and don’t want to have to explain myself.  Two, I was sick and I didn’t really want to, or have the energy to, fight with him.  I knew that we had enough Neocate stockpiled to last a couple more weeks and so there was no reason to push the issue while we both had low resources.  Third, and most importantly, I didn’t want the transition to be traumatic.  I didn’t want him to view this as an him vs. me issue.  I didn’t want him to have negative feelings about the other types of milk or just resist them because I was pushing so hard.  So I let it go for about a week.  I still asked each time what he wanted to drink and still presented two options: almond milk and hemp milk.  And he continued to request the old favorite.

Once we were both feeling better I started to push a little harder.  I actually wanted to do a trial of shelf stable almond milk. Blue Diamond makes individual servings of the shelf stable almond milk, which I wanted to be able to keep on hand for when we are out of the house or in a pinch but  E had only ever had the refrigerated version.  The shelf stable version had at least one different ingredient (tapioca starch) and because I wanted to know this safe to drink when we were away from home, I thought a full food trial was in order.   I was feeling a little brave, so I did make one change to our normal food trial protocol and decided to give him a full serving starting on day one.

I started to replace his morning cup with the shelf stable almond milk.  The first day of the trial I didn’t give him a choice.  I just handed him a cup of almond milk in the morning.  He tried to resist but I explained to him that we had to try a new almond milk so he had to drink that cup in the morning and he could have his regular cup later in the day.  For the first couple of days we did our almond or hemp milk dance for the next two cups.  He ended up getting Neocate for both.

Then I started to bargain with him a little bit and we compromised on one cup of Neocate a day.  He had to have his one cup of shelf-stable almond milk, then he got a cup of hemp milk, and then he could have one cup of Neocate.  He could choose when he had the Neocate but was reminded that he was only getting one.

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Finally we had a breakthrough!  One day he had his shelf-stable almond milk in the morning.  Then after his nap he chose hemp milk.  At bedtime I asked him if he wanted almond milk or hemp milk and he said “mesin cup.”  I said, “how about if we do another cup of almond milk or hemp milk?”  He thought about it and said “ummm, almond milk.”  I ran to kitchen and poured the almond milk before he could change his mind!  He drank it with no complaints!
The next night we went to my mom’s for dinner and I only took hemp milk, so he didn’t get a choice, but he didn’t complain and he drank it all!

That was a couple of weeks ago, and we haven’t had a cup of Neocate since. Three times a day I give E the choice between hemp milk and almond milk and he usually chooses one or the other. Sometimes he chooses neither but he hasn’t asked for his “mesin cup” since. It’s a little weird to not push his cups on him. The Neocate used to be the only way I knew he was getting the nutrients he needed, so there were days when I practically forced him to drink his cups. Now the cups are just extras. We offer them to fill the cup void and to help boost his calcium intake but his diet is complete and varied enough that he doesn’t need it. It’s crazy that I still feel a twinge of anxiety when he refuses a cup, but that goes away when the end of the day arrives and there are far fewer dishes 🙂

Goodbye Neocate!

So, it looks like we are actually finished with Neocate.  After this long process it is less bittersweet and much more sweet.  Part of me still mourns the loss of my little baby but I am so proud of the little boy he is becoming!

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Oh, and we are WEEKS away from our dairy challenge! So this may all change again…

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Got (Non-Dairy) Milk?

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As we are in the process of saying good-bye to Neocate, one must ask the next logical question: “Now what?”

My son is a creature of habit.  I have always worked hard to provide him with a predictable routine that I think he really appreciates.  Even before he could walk, when Dinosaur Train ended he would crawl over the stairs and start making his way to bed.  Although even E eventually got tired of rewatching the same episodes of Dinosaur Train over and over and over and over, he is still very much enamored of his three “cups” a day.  So, what should we put in those cups?

A couple of months ago E’s dietician told me that when children have to avoid dairy she typically recommends soy, followed by oat or hemp milk.  She said those are the “milks” that are most like dairy milk.  She was specifically referring to amount of fat and protein, which support growth and brain development and are the most important components of milk for one to two-year-olds.  Unfortunately we didn’t get around to trying hemp milk until last month, which wasn’t a big deal because E was still getting everything that he needed from the Neocate.  But I was curious about whether hemp milk would still be best now that E is over two years old, an age when pediatricians recommend switching to 1% or nonfat milk anyway.

I found surprisingly very little about which type of “milk” is the best substitute for dairy milk in toddlers. I actually couldn’t find anything in the medical literature! (Admittedly I am not a nutritionist or dietician and may have been looking in the wrong places, so if you know of any published papers, please share!).  There are several websites and blogs that discuss the merits of various “alterna-milks,” but most are written with the assumption that an adult will be using them.   There were two sites that seemed to give good information about milk alternatives for children (KC Kids Doc and Amazing and Atopic ) and I encourage you to read what they have to say.

For my own edification I wanted to compare all of E’s “milk” options side by side (have I mentioned that I tend to over-research?).  And because this question comes up all the time among parents of children with milk allergies, I even included the “milks” that aren’t safe for E right now.  I’ll admit that this is a quick survey of some of the most common “milks” on the market.  I just chose one brand for each type, so it is possible that the nutrition information can change from brand to brand.  It is also important to always check the ingredients.  For example, the Tempt Unsweetened Original Hemp Milk is the only rice-free version of hemp milk that can find!

The chart below includes the basic nutrition information for each of the major types of non-dairy milk, as well as whole and 1% cow’s milk, to give you some perspective.  All of the information is based on a serving size of 8 fluid ounces.  The daily recommended values (DVR) are the ones provided by the manufacturers, so remember that they are based on the recommendations for adults.

Non-Dairy “Milk” Comparisons

Click on the picture to open a more readable .pdf

milk chart

Most people think of calcium as milk’s most critical component. The companies that make “alterna-milks” are well-aware of this and are happy meet that requirement.  It seems that all types of “milk” are fortified to ensure that they have at least as much calcium as cow’s milk, often more.   So, I don’t think it makes sense to base my decision on calcium content alone and looked closer at the rest of the nutrition information, like ingredients, calories, sugar, sodium, fat, and protein, as well as the nutritional “perks” provided by some of the “milks.”

The plant-based “milks,” tend to have fewer calories than whole cow’s milk. However, the alterna-milks require more ingredients to achieve a cow’s milk-like taste. This often includes sugar or another sweetener (like brown rice syrup). So, watch out for sugar (rice milk and oat milk have way more sugar than others). The plant-based milks also require some sort of thickener, like carrageenan or xantham gum. I’ve heard of these additives causing reactions in some FPIES kids so make sure you keep that in mind if you fail a milk trial (i.e., it might be the carrageenan not the almonds that are the allergen). Carrageenan is pretty controversial but that is beyond the scope of this post. As far as I’m concerned, there isn’t enough evidence that food-grade carrageenan is harmful and it’s so pervasive in alterna-milks that trying to avoid it isn’t worth the aggravation. We already avoid so many things that we know will hurt E, I’m not interested in adding poorly supported “maybes” to the list.  We’ll just hope that future research doesn’t come back to point out that I’m an awful mother for poisoning my child with carrageenan. Obviously, this is a personal decision so please do your research.

If you are looking for a beverage that has a nutrient makeup similar to milk, soy is the way to go. It has the same amount of protein as cow’s milk.  The calories are similar to 1% milk and it has approximately the same amount of fat as 2% milk (not shown on the table).  All this with less sugar, cholesterol, and sodium.  But soy is controversial too. I’m not well-versed in the GMO and phytoestrogen issues related to soy. E is clearly allergic and so we generally keep it out of the house. Again, do your research, talk to your doctor and/or dietician, and decide for yourself whether the benefits are enough to outweigh any possible risks.

       

While we are on the topic of “milks” that aren’t an option for E right now, let’s look at rice and oat milk. These two have almost as many calories as whole milk with the about the amount of fat as 1% milk.  They have more sugar and significantly less protein (though oat milk’s 4g of protein is pretty high compared to the other options).  They do not boast any additional nutrients, either.  Another no-no for us, coconut milk, has far fewer calories but more fat and less protein.  I’ve gotta say, the stats here do not make me sad that they aren’t options for E right now.

We’ve been drinking almond milk for about a year. It’s been really helpful as a milk substitute in recipes (I’ve used it in everything from cupcakes to mashed potatoes) and I like it in my cereal. It has a mild and slightly nutty flavor and I never notice a difference in recipes but would rather skip a latte than use almond milk (yuck!). We tried it as a way to test a tree nut and get a milk substitute.  I never cared much about the nutrition stats because E was still getting everything he needed from Neocate and almond milk was never meant to provide him with everything he missed out on in cow’s milk.  But now I wondered how it stacked up.  It’s really low in calories and fat. It has no sugar but only 1g of protein and is higher in sodium than the other options.  It does include bunch of vitamins and minerals including 50% of the (adult) daily recommended value of vitamin E. I feel pretty good about using it daily (for E and me) but I don’t think we can rely on it solely and, because of the low protein, I definitely wouldn’t have been comfortable using it in his cups before his second birthday.

We’ve recently added hemp milk to our repertoire. I think it’s creamier than almond milk but also has a stronger flavor. Even the unsweetened original flavor has added vanilla. Vanilla is one of E’s favorite flavors, making hemp milk an automatic winner in his book. As I mentioned before, it was recommended by E’s dietician so I expected it to compare well to the other milks. And it does. It has more calories than almond milk but not as many as cow’s milk. It is the alterna-milk with the most fat, actually the same amount as whole milk!  This is good for the brain development of one-year-olds but I’m not sure that my 95th percentile-for-weight two-year-old needs all that fat. The good news is that it’s supposedly “good fat” and has a lot of omega 3 and omega 6 fatty acids.  It has no sugar and a respectable amount of sodium but just an ok amount of protein (2g).  My favorite thing about the hemp milk is that it’s safe for E and he loves it.  The other stats make me comfortable serving it to him on a daily basis but I’m still happy that he had the protein of the Neocate until age 2.  It’s vanilla flavor makes me hesitant to try it recipes.  I assume it will be ok in sweet recipes but I don’t know how it will hold up in savory ones.  Oh, and it also failed the latte test 😦

           

Out of curiosity I added cashew milk and flax milk to the list.  E passed a cashew trial this summer so I know the milk would be safe for him.  However, that seems to be one of its few positives.  Another one is that it is low in calories, but it is on the high side for fat and has no protein.  Flax milk, on the hand looks like a winner!  It’s low in calories and fat (which might make it a poor choice for the under-two crowd) as well as sugar and sodium.  BUT it has 5g of protein!  That’s higher than any of our other options.  It also contains omega 3 and omega 6 fatty acids.  I haven’t tasted it so I can’t report on that.  However, flax milk really does seem like the best option.

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So, what will be in E’s cups? We decided to let him decide – between almond milk and hemp milk.

These are the two that are safe for him and I feel comfortable with the stats. They each have their pros and cons and I don’t feel like one really wins in the nutrition field.  As far as taste, hemp seems to have E’s favor but almond will be better to have around for recipes.  The hemp milk is sold in smaller containers that are about half the size of the almond milk and the same price, so the almond is easier on the wallet.  They are both available in shelf-stable versions, which is nice for stocking up.  I’m also really excited that the shelf-stable almond milk is sold in 11oz containers.  This will be great when we are on the go!  I like the idea that E gets to choose, I try to allow him autonomy as much as possible and this is one more way that he can feel in control of his diet.  We’ve only been doing this for a couple of days but so far he doesn’t seem to favor one or the other.  I think it really depends on his mood, just like what you drink depends on how you are feeling at the time.

I’m kind of bummed that we tried hemp milk instead of flax milk.  I really think that would be the best version and if E passed it (and the taste was ok) I might consider that as our primary milk.  However, as my husband so eloquently said, “we don’t really need him to have another weird milk right now.”  He’s right.  We have two good “milk” options and other foods to try.  I don’t really see a compelling reason to push another version of milk.  Also, we are just over a month away from E’s cow’s milk challenge (eek!).  If he passes milk and likes it we’d likely just switch over to cow’s milk anyway.  If he doesn’t pass maybe we’ll give the flax a try, but I’m really trying to be optimistic about a pass

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                                        I love seeing this little boy with a (hemp) milk mustache!! 

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So, what are your thoughts? What “alterna-milks” do you use?  Have you tried flax milk?

Remember, this is just my analysis.  I’m not qualified to make recommendations but I hope that sharing this information will help to give you an idea of what’s out there and how we made our decision.  Please talk to your child’s pediatrician, allergist, gastroenterologist, and/or dietician so that you can make the best choice for your child.  Good Luck! And (as always) please share any additional information in the comments section.
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A Bittersweet “Last Time”

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A poem called “The Last Time” has shown up in my Facebook newsfeed several times over the past couple of weeks.  Have you seen it?  It’s one of those poems written to make parents weep. Seriously. It’s all about how your child will grow up and how there will be a last time for all of the things that you take for granted (wiping a dirty face, holding a hand to cross the street, etc.).  It’s actually quite beautiful and one of those reminders that we need as we struggle with the parental hassles that make up our daily to-do lists. If you need a good cry, you can read it here, but have your tissues ready.

I’ve been thinking about this poem a lot today as we are in the midst of a “last time.”  Today will likely be E’s last full day of Neocate Junior.  And quite frankly, I’m a little emotional about it.  (Jonathan, stop rolling your eyes.)

It never occurred to me that a baby formula would become such a part of our lives and now that we are on the cusp of moving on I don’t really know how to feel.

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Let me explain…

Before E was born I knew I wanted to breastfeed.  I had read all about the benefits of nursing and wanted to provide them for my son.  You know me, I read a bunch of books and articles and even dragged my wonderfully supportive husband to a Saturday morning workshop.  I was ready.  And apparently so was E.  He latched on immediately in the delivery room and I breathed a sigh of relief that nursing was going to work for us.

That was last time that feeding my infant was easy.

Somehow we started having problems with nursing and E lost a significant amount of weight in the hospital.  I could tell that it was serious because the attending pediatrician (who actually happened to be a neonatologist – the kind of doctor who has seen very sick newborns) wouldn’t discharge E until we had made an appointment to see his pediatrician the following day.   At that very first pediatrician appointment, the doctor told me that I had to start supplementing with formula to get his weight back up.  I had read that this was a bad idea and looking back I probably should have tried to nurse for a little longer, but I was scared.  Here I was sitting in the pediatrician’s office with this new tiny person who was completely reliant on ME.  A tiny person who wasn’t even supposed to be here for another two weeks!  I was exhausted and shell-shocked.  I felt like I didn’t know anything so I did what I was told.

And so that was the beginning of our formula story.  I’ve written about this before so I won’t bore you with the details of visits to lactation consultants and pediatricians and falling off of growth charts and trying various formulas to get my child to stop vomiting and start growing.

Shortly after E turned 4 months old we found ourselves sitting in an allergist’s office.  When we got to that appointment we were exhausted and bewildered.  We had this adorable baby who was finally growing but continued to spit up constantly.  He always seemed uncomfortable and didn’t sleep (so neither did we).  I remember the comforting relief as the allergist listened to us, validated our concerns, and agreed that something was wrong.  I remember the confusion when his scratch test was positive for milk and the fear and disbelief as we were trained on how to use an epipen.  And I remember the hope that I felt when we were presented with Neocate, a hypoallergenic amino acid formula.

I felt confident that Neocate was the answer.  This can of powder was going to nourish our son without poisoning him the way everything else had.

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Loving his cup of Neocate at about 9 months

Well, it took several weeks for the allergens to work their way out of E’s system and in the meantime we actually added more!  But eventually he started to thrive on Neocate.  As we learned more about his reactions, eliminated his allergens, and found out that he had FPIES, we started to feel more confident in our ability to safely nourish our little boy, thanks to Neocate.

When E turned one, as most families were switching over from formula or breast milk to whole milk, we switched from Neocate Infant to Neocate Junior.  His diet was still very limited and his nutritionist explained to us that while non-dairy milks have high levels of calcium, there was no substitute for the protein and fat in cow’s or soy milk.  So we continued to give E Neocate several times a day.  He looked forward to his “cups.”  In fact, when he was 16 months old and had a stomach bug we fed him only clear liquid for a day.  He practically jumped for joy when we gave him a “cup” of Neocate the next morning and he said “yum” for the first time 🙂  This formula has been his comfort food, the first food that didn’t make him sick and the stimulus that finally helped him to grow into the rambunctious boy that he is today.

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Ok, I may be romanticizing Neocate a little.  There were definitely some things about it that we didn’t love.  For the past two years, every morning (before coffee) we have to pull out the scale, and measure, scoop by scoop, the amount of powdered Neocate for the day.  This results in various degrees of powdery mess, depending on how tired we were or how (im)patient E was.  Then each night we had to hand-wash the container that we mixed it in so that it was ready to go for the next day.

Relying on Neocate, especially when it was E’s only form of nutrition, was sometimes stressful.  We always had to have enough of it with us.  You can’t just run into a grocery store and pick some up if you forget it.  We never left home with an “emergency cup,” enough powder to make one extra cup if something happened and we found ourselves needing it.  Oh, and it wasn’t cheap!  At one point E was going through about two cases every three weeks.  These two cases had a $255 price tag that we paid out-of-pocket for several months.  After much stress and fights with our insurance company, they finally agreed to cover it – but I’m pretty sure that we grew several gray hairs in the process.  Neocate wasn’t always easy or perfect, it has been our constant. And I really believe that it saved our little boy.

Yesterday, we returned to the allergist.  This appointment was so completely different from that first time.  Instead of carrying our thin, tired, spit-up soaked infant into the office like zombies; our chubby little boy in his clean button-down shirt led the way to the exam room.   The answer to the nurse’s “how is everybody doing?” was an enthusiastic “great!”  We didn’t have any reactions to report since our last visit in April.  We were continuing to successfully add fruits, vegetables, nuts, and fish to E’s diet.  We didn’t really have any concerns.

Everyone was pleased to see how well E was doing.  The kid sure knows how to work a room, too!  He had all of the staff ogling over him in minutes.  He had IgE skin tests for all of his allergens and they were all negative! And so the plan moving forward is to start to challenge the allergens that he’s been avoiding for over a year (more on that later).  Then the doctor said it – Neocate Junior is no longer necessary.  

E can now safely drink almond milk and cashew milk.  We are almost finished a hemp milk trial, too.  The doctor is confident that with his diverse diet and these milk-alternatives, he doesn’t need the Neocate.

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It’s definitely a relief.  It’s amazing that after two years, we are finally off of formula.  But I can’t help to be a little bit sad that it means my baby is growing up.  Sure, it’s been over a year since he has had a bottle, but something about the formula allowed him to stay my baby.  I guess I am feeling the same way all parents feel at all milestones, it’s exciting to watch our children conquer another new skill in life, but sad that we have to experience another last time.  I think I also feel kind of like my therapy clients feel at their final session.  Neocate has been like therapist to us.  It has guided us through some really tough times.  It helped us pick up the pieces when we were at our lowest point.  It gave E the nutrition that he needed to grow and the ability to branch out and try new foods.  It has been our support for so long.  But, as I always tell my clients, the goal of therapy is to provide them with what they need so that they can move forward on their own, without the need for a therapist.  And that is what Neocate has done for E  (and for me and Jonathan, too).

We still have some of our Neocate stash so I think we will slowly work it out of his diet over the next couple of days.  Honestly, this is probably more for me than it is for him.  As much as he loves his “cup” I think he’s just as happy when it has almond milk or hemp milk in it.  In fact, E can’t seem to get enough hemp milk! I can’t predict if he will miss his Neocate or not.  He only stared at me blankly when I tried to explain the significance of his last full day of Neocate.  I think I’ll miss it for now but someday I won’t even be able to remember why it felt sad to me to leave it behind.

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Of course, part of my baby growing up, also means that he is getting closer to outgrowing his allergies!  We were told from day 1 that he will likely outgrow the allergies by age 3 (though the current research isn’t as optimistic).  That is officially less than a year away now!  We have scheduled his hospital-based challenges for milk, rice, and oat in November and December.  It’s possible that by end of 2014 he will be able to safely eat these three foods that we have been avoiding for most of his life! I can’t even wrap my head around that.  I’m trying not to get my hopes up too high but as I made my last 22 ounce pitcher of Neocate this morning I couldn’t help to wonder if this is the beginning of our FPIES “last times.”  And the beginning of so many firsts!

 

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“Cheers!”